I had my dosage lowered on my last infusion and i am still having some problems with my hands, they still burn and i am still putting cream on them all the time i am beginning to think that this is a permanent problem and i will now have 2 permanent problems one being the neuropathy and the other being the hand foot syndrome.
I'm hoping that after the treatment is over however that the hand foot syndrome does go away i will keep things posted as they happen
Thursday, February 10, 2011
Saturday, February 5, 2011
Normal.....What is That!!!!!!!!
The wonderful drug that so many of us are on for OC, the side effects didn't start until after my 2nd - 3rd dose then all hell broke loose with the pain, hurting, burning, rashes, skin irritations, etc..
I just had my 4th dose this past Tuesday and the Dr. did lower it down but i know that having these sensations in my hands are now pretty much permanent part of my life, I have to battle between the neuropathy and the hand foot syndrome. Not sure which one is worse because due to the Doxil the neuropathy is hidden while the hand foot syndrome just keeps forging through the line.
The creams I have are working so that is a good thing, it just gets very aggravating when I want to do something and the loss of feeling in my hands prohibits me from doing it or stops me in my tracks as i try to do something..
Example driving: I have to drive everywhere and there are times that when i get behind the wheel and i am driving down the road my hands and fingers are hurting because i am either holding on to the wheel or i am turning the wheel to make a turn, can't just let the wheel go and slide back into place it does have to be held ever so slightly and guided so as not to cause an accident. and then there is the cracking of the hands the skin is peeling like an orange and i have white spots all over its hard to use creme when your driving because it makes the wheel slippery(not good), it makes everything i touch slippery and of course its around that time (when your hands are slippery) that everyone wants to call on your cell(good luck answering that with slippery hands), or someone decides to cut in front of you as though your not even there.
Using my phone: I can literally feel the tingling sensations when i use the phone to text or call someone, i can feel the tingling in my fingers even when i just do this little bit of typing on the computer, i feel it in the mouse, and if i use my laptop to watch a movie with i really feel it then. I feel some days like if i touch something its going to explode because i have so much crap going through my body that i might end up igniting my micro wave or my toaster oven.
Cleaning house: when i vacuum i feel the magnetic field as i plug or unplug the cord from the outlet occasionally i will see a spark but nothing major happens to i'm set to do what it is i need to do,
Avoiding everything: I think the hardest thing for me being on the Doxil is the things i have to avoid, there are just some things you can't help getting caught in, steam, hot water, the sun.
In the beginning when i first got OC, and i was going through my 1st treatment and i had such pains, aches, and could hardly walk, or even for that matter do anything at all, I always told myself this is the worst that i will ever get nothing could ever be worse than this and if i can survive this then i know i'll be ok. Then when it started again and i was in treatment a 2nd time i didn't have the same problems as i did the first time which was a relief until of course i got a reaction to the Carbo and had to be admitted every 3 weeks for treatment and to be desensitized for the carbo.
Now with #3 here and the medicine changing and the treatments changing and the whole process of what i have to do changing, i never in my life thought i would have to be on a heart monitor or for that matter ever thought i might end up with CHF due to the drug i was on, and the side effects are far more worse than those that i had with the other drugs. (most are stated earlier on).
Sometimes it seems hopeless and not worth the effort to embrace life and live it to the fullest when it seems like your running on half full to begin with. I know that soon it will be over and with any luck things will go back to somewhat normal, my versions of normal keep changing so much i don't know what my kind of normal is anymore. I just hope that when all of this is over i can finally relax and not have as much pain as i am having right now, i also know that as long as we all keep the support going and stay in tune with each other that things will eventually go back to "Normal" what ever normal may be as pertains to each of us.
I just had my 4th dose this past Tuesday and the Dr. did lower it down but i know that having these sensations in my hands are now pretty much permanent part of my life, I have to battle between the neuropathy and the hand foot syndrome. Not sure which one is worse because due to the Doxil the neuropathy is hidden while the hand foot syndrome just keeps forging through the line.
The creams I have are working so that is a good thing, it just gets very aggravating when I want to do something and the loss of feeling in my hands prohibits me from doing it or stops me in my tracks as i try to do something..
Example driving: I have to drive everywhere and there are times that when i get behind the wheel and i am driving down the road my hands and fingers are hurting because i am either holding on to the wheel or i am turning the wheel to make a turn, can't just let the wheel go and slide back into place it does have to be held ever so slightly and guided so as not to cause an accident. and then there is the cracking of the hands the skin is peeling like an orange and i have white spots all over its hard to use creme when your driving because it makes the wheel slippery(not good), it makes everything i touch slippery and of course its around that time (when your hands are slippery) that everyone wants to call on your cell(good luck answering that with slippery hands), or someone decides to cut in front of you as though your not even there.
Using my phone: I can literally feel the tingling sensations when i use the phone to text or call someone, i can feel the tingling in my fingers even when i just do this little bit of typing on the computer, i feel it in the mouse, and if i use my laptop to watch a movie with i really feel it then. I feel some days like if i touch something its going to explode because i have so much crap going through my body that i might end up igniting my micro wave or my toaster oven.
Cleaning house: when i vacuum i feel the magnetic field as i plug or unplug the cord from the outlet occasionally i will see a spark but nothing major happens to i'm set to do what it is i need to do,
Avoiding everything: I think the hardest thing for me being on the Doxil is the things i have to avoid, there are just some things you can't help getting caught in, steam, hot water, the sun.
In the beginning when i first got OC, and i was going through my 1st treatment and i had such pains, aches, and could hardly walk, or even for that matter do anything at all, I always told myself this is the worst that i will ever get nothing could ever be worse than this and if i can survive this then i know i'll be ok. Then when it started again and i was in treatment a 2nd time i didn't have the same problems as i did the first time which was a relief until of course i got a reaction to the Carbo and had to be admitted every 3 weeks for treatment and to be desensitized for the carbo.
Now with #3 here and the medicine changing and the treatments changing and the whole process of what i have to do changing, i never in my life thought i would have to be on a heart monitor or for that matter ever thought i might end up with CHF due to the drug i was on, and the side effects are far more worse than those that i had with the other drugs. (most are stated earlier on).
Sometimes it seems hopeless and not worth the effort to embrace life and live it to the fullest when it seems like your running on half full to begin with. I know that soon it will be over and with any luck things will go back to somewhat normal, my versions of normal keep changing so much i don't know what my kind of normal is anymore. I just hope that when all of this is over i can finally relax and not have as much pain as i am having right now, i also know that as long as we all keep the support going and stay in tune with each other that things will eventually go back to "Normal" what ever normal may be as pertains to each of us.
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